Hi and thanks in advance for any help or opinions. My story seems like many I have read but maybe I am overthinking. 6 years ago I started getting headaches and blood pressure went up. I am very active and always ran perfect blood pressure. I was told to go on BP meds. Still had issues. Talked the Doc into a brain MRI. Came back with white matter on brain with a desciption, from whoever reads them, that it looks like undiagnosed LD. They drew a titers(not sure)and said no LD. Over the past few years had BP problems again. Started napping/fatigue and chalked that up to being 46. Now I have constant headaches and generally foggy feeling. Sort of dizzy but not fall down dizzy. Also tingling on bottoms of feet, knee hurts and stiff neck every day. They say get a massage and it is muscular. No help. I am tired of this feeling and feel that I am on my own. This seems to have gotten worse the past 2-3 months with no relief. 6 years seems like a long time till I read other posts. Any advise? Trying to go for another MRI but not sure what that will tell me. Can I get tested on my own somehow? Thanks.
Posted by Lymetoo (Member # 743) on :
An MRI will not diagnose Lyme. It just provides more info on it.
Posted by YinYang (Member # 36358) on :
Lymetoo gave you a good bunch of links to review. I would recommend you seek out a Lyme Literate Doctor (LLMD) in your area to get you tested appropriately. Most general practicioners use a test that is notoriously unreliable. Also a good LLMD should consider co-infections. I'm not sure if high BP is a Lyme symptom, but I have had many of your other symptoms and am positive for Lyme.
This board is full of resources, good luck as you move forward!
Posted by TF (Member # 14183) on :
You can't get tested on your own. Anyway, lyme is never diagnosed by a test. Rather, it is diagnosed by a DOCTOR. That is what the most famous lyme doctor says, anyway.
Here is where he said it:
"DIAGNOSTIC HINTS
Lyme Borreliosis (LB) is diagnosed clinically, as no currently available test, no matter the source or type, is definitive in ruling in or ruling out infection with these pathogens, or whether these infections are responsible for the patient's symptoms. The entire clinical picture must be taken into account, including a search for concurrent conditions and alternate diagnoses, and other reasons for some of the presenting complaints. Often, much of the diagnostic process in late, disseminated Lyme involves ruling out other illnesses and defining the extent of damage that might require separate evaluation and treatment.
Consideration should be given to tick exposure, rashes (even atypical ones), evolution of typical symptoms in a previously asymptomatic individual, and results of tests for tick-borne pathogens. Another very important factor is response to treatment- presence or absence of Jarisch Herxheimer-like reactions, the classic four-week cycle of waxing and waning of symptoms, and improvement with therapy." (page 7)
The standard test a regular doctor does misses 40% or more of all lyme cases.
So, you must get to the best lyme doctor you can find. Then, when that clinician listens to your story, examines you, and says that he/she believes you have lyme, that opinion means something.
Then, to confirm the suspected diagnosis, the lyme doc will put you on some lyme treatment to see what happens. That's the last sentence in the quote above: "Another very important factor is response to treatment...."
If you have a herxheimer reaction (worsening of symptoms a few days after starting lyme treatment), and if you notice a waxing and waning of symptoms every month, there is no doubt you have lyme disease.
Look at pages 9-10 of the Burrascano Guidelines and you will see your symptoms listed there.
For example:
"Neck creaks and cracks, stiffness, neck pain"
This is a CLASSIC lyme symptom. I had it for months on end, never thinking much about it. The headaches also. Knee pain is classic lyme. And, the tingling on the bottoms of the feet is listed as "Sore soles, esp. in the AM."
How many other diagnoses would cover all of these unusual symptoms?
So, to me, lyme is the diagnosis that explains all your symptoms, the MRI results (very important piece of info.), and the failure to improve in spite of massage, etc.
I will respond to your doctor request also. I think you are on your way to getting back to health. Nothing good can happen until you get the diagnosis, and I think you have hit on it. Good for you.